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The real story about XMRV coming out today?

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, Sep 23, 2011.

  1. Wildcat

    Wildcat Senior Member

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    Esther, it looks like the problem is in the very confident tone of your postings - which appear to confidently proclaim; despite you having written that:

    Esther12: " I have to admit, I feel a bit out of depth with any attempt at analysis myself

    I'm not going to pretend I know what all this means,...
    .
    .
    As it has already been pointed out, there are high stakes at risk here.
    .

    I must say that I am personally concerned at the overconfident tone of your posts on complex science matters that you have already admitted that you don't understand.
    SOC and ukxmrv like this.
  2. Esther12

    Esther12 Senior Member

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    I'm very confident about those images being the same. Because they are. Because I can look at one image, next to the other, on top of the other, and see that they are the same. Having seen others denying something so obviously true may have made me feel that I need to be more forthright in contradicting claims which seem wrong to me.

    Other than that, you would have to provide an example of where I have been over-confident, because as you note, I have been trying to make my uncertainty quite clear. I may well have made some brief replies which did not fully explain every source of uncertainty - but I think that I have explored these in all the discussions I've been involved with.
    Sam Carter likes this.
  3. Wildcat

    Wildcat Senior Member

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    @ Esther12:

    You were also VERY CONFIDENT in urging us to trust the INSTINCTS of a journalist who is known to be irrevocably biased about ME! Whilst confidently admitting that you "don't understand it properly".

    Esther12: "I don't really understand it properly, but it could be that Trine's instincts were right"
    .

    Per-lease!!
    ukxmrv likes this.
  4. Esther12

    Esther12 Senior Member

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    "I don't really understand it properly, but it could be that... "

    ?

    You're counting that as a 'very confident urging'?

    I can only disagree.
    Sam Carter likes this.
  5. Wildcat

    Wildcat Senior Member

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    '@ Esther12 -
    .

    You really expect us to "trust the instincts" of Trine Tsouderos!!???
    ukxmrv likes this.
  6. Esther12

    Esther12 Senior Member

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    Who are you quoting with "trust the instincts"? Who said that?
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  7. Bob

    Bob

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    Wildcat, I think it is unhelpful to use someone's honest words against them in order to win an argument.

    Esther could have pretended that she is an expert in retrovirology, but she didn't ... Because she is honest with us...

    And then she proceeded to give her opinions, based upon her understanding of the issues.

    Just because she does not have a comprehensive understanding of retrovirology does not mean that she cannot come to an informed opinion based on a partial understanding of the issues, and on common sense.

    After all, very few of us are expert retrovirologists, but we all have opinions on XMRV, and some of members of the forum have very strong opinions about XMRV.
  8. leela

    leela Slow But Hopeful

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    Eco,

    While I am not expressing a view here about your position or your conclusions (which you are of course welcome to), I will express a view about how you are presenting them.

    You have expressed frustration and exasperation at people who do not see what you see, and you have expressed that you value science, are a scientist yourself, and attempt to help people see things from a scientific standpoint.

    Here is the difficulty I am having with your posts:
    -At this stage your posts are almost entirely based on allegation alone
    -You excuse yourself from having to support these allegations for reasons of scientific secrecy
    -You assure us that you have proof without being at liberty to disclose it
    -All the while slandering another scientist

    In what scientific circle is it acceptable to announce one's conclusions with full certainty *before* you can offer up the
    data and evidence?


    My suggestion to you, even though it is exciting to be the bearer of news, is to refrain from posting your allegations and hypotheses as anything other than opinion until you are within your legal rights to support them, or are able to do so without endangering another scientist's life/work/reputation.


    Since you would ask the people here to be more scientific in their approach, I ask you to please try to be more objective and scientific in your own words and approach as you address us as a group.

    Until you present evidence, no one can know if you really are a scientist, if you have the affiliations you claim, or if the data you have is valid. This is no judgment on you, this is just a fact of life on an internet forum. I could claim I am a former US congressperson with all kinds of inside info about how corrupt certain political figures are, allude to those people and their nefarious actions, but apologise that due to government constraints can't tell you how I know that.

    If you have made it this far down my post, I want to say that it is not my intention to make an enemy of you here, but I fear you will take this post in that spirit. I will forever have huge affection and respect for you in my heart for what you did for Tania, so it saddens me to think you might be offended by what I express here. But I wish to express it because the unsubstantiated nature of your posts would be like any other speculation, processing, and truth-seeking here, except that you are trying to elevate it to some special status through "unrevealable" proof.

    I guess I could have left my post to the simple suggestion I made above to wait on insisting you are right until you are in a position to reveal your evidence. Until then, maybe post your thoughts as an opinion that is equal to any other opinion here on this open forum that includes a wide array of human beings.
    SOC, ixchelkali and Roy S like this.
  9. Wildcat

    Wildcat Senior Member

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    Esther12 wrote: It looks like there's some reason for additional concern about that slide. A copy of it just got posted here:

    http://forums.phoenixrising.me/showt...l=1#post209691

    I don't really understand it properly, but it could be that Trine's instincts were right.
  10. Wildcat

    Wildcat Senior Member

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    @ Bob,

    for someone who admits they don't understand it properly, Esther certainly has made a lot of posts on the subject of alleged research fraud. Thats the problem.
    ukxmrv likes this.
  11. Esther12

    Esther12 Senior Member

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    Thanks Bob. If they're going to try, they should at least try to get them right!

    This debating style seems familiar.

    No-one knows exactly what's going on with the recent allegations that have been made about the Science paper - and yet we're discussing it. It's not just me who is posting about it, although it seems that I am the only one you think should not be. What qualifications are required before you permit someone to comment on this topic?
    Sam Carter likes this.
  12. Bob

    Bob

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    I'm frustrated with the accusations of fraud floating around on the internet as well.

    But at the end of the day, Esther is just vocalising what some other people think, so maybe there is a better way to win the argument rather than telling someone they don't have a valid opinion because they have a limited understanding of virology.

    Personally, I find it unhelpful to suggest that there is some deeply worrying wrong-doing taking place when there is no evidence for that whatsoever.

    But I accept that Esther has her own opinions, that I happen to disagree with.

    I believe that those slides show no evidence of corruption, neglect, sloppiness, or willful wrongdoing, but I've obviously not done a very good job of explaining to others why this is so clear to me... And that's a failing on my part.
  13. Esther12

    Esther12 Senior Member

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    Just to be clear - I'm not alleging that anyone has behaved fraudulently. I don't think that the evidence is good enough to say either way. I do think that there's enough evidence of some possible manipulation of results for the allegation to be taken seriously though, and for us to need some good answers and clarifications from Mikovits and the WPI. When it was just the IACFS/ME slide, I really wasn't concerned and was quite happy to assume it was just a minor error - with this additional image, I think that it has become more serious, and a more complete explanation will be needed.
    Sam Carter likes this.
  14. leela

    leela Slow But Hopeful

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    There's no need to change anyone else's opinions.
    There is no need to make someone wrong to feel right.
    Let's accept that there is a wide array of people here with thoughts and opinions all over the map.
    Everyone can stay their own course without having to sway others and can debate their positions with respect for all kinds of points of view.
  15. PokerPlayer

    PokerPlayer Guest

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    Actually, I think if I modified the above quote to put " about cfs/me" at the end of every sentence, it would be a great way to explain why it is important to be opinionated and to try to change someone else's opinion. This isn't kindergarten, somebody is right, somebody is wrong, and there are people suffering.
    Wildcat likes this.
  16. Esther12

    Esther12 Senior Member

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    No.

    If one makes an accusation, then there should be evidence to support it. If the evidence is sufficiently compelling, then the accused should be expected to respond to it.

    Others have accused Mikovits of misrepresenting her results in Science. I don't know if that accusation is fair or not, but it does seem that the evidence is compelling enough for a response to be required. Maybe Mikovits will reveal a different original, which shows the one on-line is a fake. Maybe there will be another explanation for the changes in the labels, which will serve to clear her of any possible wrong-doing. I have no idea - but I don't think we can just assume that the presentation of the Science slide with new labels at the IACFS/ME conference was only a minor error, in the way that I was doing yesterday.
    Sam Carter likes this.
  17. Wildcat

    Wildcat Senior Member

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    Esther12 wrote: "This debating style seems familiar.
    .

    If you are adressing me, Esther, then no I don't.

    And I don't have any specific "debating style" - but I certainly don't appreciate being asked to consider Trine Tsouderos's "instincts"

    I think you will find that the sum total of my posts on this subject are rather less thatn Esther's and I also have the right to express my views
    currer and ukxmrv like this.
  18. Bob

    Bob

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    Yes, you are right Leela. We should present the evidence, make an good case, present our side of the argument, and allow people to make up their own minds about an issue. That's probably a good way to go about making change in the world.

    But it's not wrong to want to change people's opinions. Most debates and arguments are based on a desire to influence people, and to persuade people to change their opinions.

    And it's not possible to respect all kinds of points of view, if you believe that they are deeply flawed.

    For example, I would not respect the views of someone I considered to be amoral, or someone like Robert Mugabe. (But this is just an example to make my point, and does not relate to anyone on this forum, or to the views of anyone on this forum!)
    Wildcat likes this.
  19. leela

    leela Slow But Hopeful

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    Yes, PP, but you are not distinguishing here between opinion and fact. It is an important distinction in your alteration of my posting.
    I would appreciate it, too, if you would remove the quote function from your redaction of my post so that it does not get read/used out of context since that is not what I said or meant.

    You can have the desire to change someone's opinion, but making them wrong is usually not an effective means to do it.
    More effective persuasion, as Bob says, is to present your own case with the intention of having a positive effect.

    And Bob, you don't have to respect an opinion or even the person having it I suppose, but respect the reality that people have different points of view. What you do with that is your choice.
  20. Ecoclimber

    Ecoclimber Senior Member

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    First: Comments concerning the Chicago Tribune. When a major newspaper such as the Chicago Tribune, Washington Post, New York Times etc. through their investigative reporting state they have a valid and credible information, then you better believe they have done their homework or the editor would not have allowed the information to be release. Unlike the tabloids, they have journalist ethical standards which they must adhere to.

    Second: Like newspapers, confidential sources come forth to provide information. They want to remain unnamed for a reason otherwise they would not come forward with information for fear of retribution. All major investigative reporters use confidential sources which are unnamed.

    Third: I have the original file or files which I cannot upload as they are 9 mb in size and cannot be uploaded on this forum for all to see and make their own evaluation. If someone can direct me to where these files can be uploaded then let me know.

    I also believe that it does a disservice among the patient community by giving patients a false sense of hope without any foundation of scientific data/proof or research. To make connections of XMRV with other associated diseases and now HGRV as causing ME or other associated diseases without proper scrutiny by the scientific community on their proof/data or research, is outside normal behavior on the part of the institution and the scientists involved. To give patients a false sense of hope and yank that hope away is just as cruel and I wonder if WPI or Mikovits will apologize to the patient community!


    Will the WPI refund the lab cost to patients based on those assays? There was no contracts involve with patients?

    Then there is a whole new spectra arising that indicated that the WPI and Mikovits were sloppy in their tests indicating XMRV with CFS patients in the least. However, in the worse there is an accusation being made that their is fraud associated with these tests with the WPI and Mikovits within Science and in regards to disseminating false information to the patient community.

    Since this thread and this section of the forum is to keep the patient community informed on XMRV, I will post some information on here that has just surfaced which is now coming to light. This information was known to some a few months ago but the evolution of time and additional research has highlighted this fact that cannot be ignored. I don't like being the bearer of bad news.

    I also wonder who gives anyone the right to speak on behalf of the WPI and call this HGRV not XMRV? Who gives anyone the right to make statements that clearly contradict the WPI and Mikovits own statements?

    Show me the data/research article that states that HGRV causes ME?

    WPI Site states:
    The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.

    We have detected the retroviral infection XMRV in greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.

    Mikovits continued to strike a defiant tone, insisting that XMRV had not been ruled out as a potential cause of CFS.


    "Anyone who says this is a lab contaminant has drawn the wrong conclusion and has done a disservice to the public," she told the journal.
    She vowed to continue working to prove that XMRV is a genuine virus and is present in CFS patients. "The virus is real," she told Science. "I have isolated it from patients. I know it's there."

    "The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the blood -- not that they weren't in the patients at all."

    She vowed to continue working to prove that XMRV is a genuine virus and is present in CFS patients. "The virus is real," she told Science. "I have isolated it from patients. I know theres an outbreak of XMRV.
    Notice: no mention of HGRV!

    WHICH IS IT XMRV OR HGRV?

    There is no research data or paper to date that proves HGRV causes ME. To state otherwise is sheer lunancy![/B]

    Who are all these people that speak for the WPI and Mikovtis? What gives them the right to contradict the WPI and Mikovits own statements?


    Silverman sent the WPI VP62 plasmids in 2007 (before they 'found' XMRV in patient samples.)

    The CFS samples that left WPI were contaminated with VP62 pasmid prior to Silvermann lab receiving them in 2009. Lombardi paper states all of these ABs detected the human VP62 XMRV strain grown in human Raji, LNCaP, Sup-T1 cells (fig. S3)(5).

    Silvermans lab found VP62 plasmid in their samples. The CFS samples that left WPI were contaminated with VP62 pasmid prior to Silvermann lab receiving them in 2009. Lombardi paper states all of these ABs detected the human VP62 XMRV strain grown in human Raji, LNCaP, Sup-T1 cells (fig. S3)(5).

    Mikovits refused to name the independent lab where their test was conducted on the samples for contamination.

    All of the sequences the Whittemore Peterson Institute uploaded to Genbank were identical. They are not only identical to one another, they were identical to an infectious molecular clone of XMRV, VP62. Even though Mikovits prior to posting indicated otherwise.

    Show me the sequences of these HGRV's from the WPI in GenBank. Where are they? An apology should be made to all the researchers who were vilified and had their motives and character questioned by a very small niche group of militant WPI supporters because they couldn't detect xmrv in the blood samples. As stated earlier, even Mikovits couldn't detect them either using their 'own' assays and admitted that xmrv could not be detected by any existing assay.

    Meanwhile, at the WPI, they say they get FANTASTIC results with their assays. The 67% positive rate flew up to, what, 100% after the Science publication And yet, when WPI/Mikovits are given samples where they do not know beforehand who is 'supposed' to be positive and who is 'supposed' to be negative in a blinded study. Zero detection for xmrv

    Then out of the blue, Mikovits changed her tune saying that what we found was not xmrv but hgrv but had to call them xmrv because of Silverman. Huh? She went around the world calling it xmrv not hgrv for years. She even vehemently denied that there was any contamination issue. But then makes this incredible statement after the BWG demonstrated her xmrv theory is dead that it was HGRV they found not xmrv in the Lombardi et al paper. Huh. Mikovits in a short span of time contradicted her own statements. She completely reversed herself buy now stating that what they found were hgrv's when she couldn't repeat her own test using blinded controls in the Lombardi. Where is the proof/data evidence for such claims? Zero, Nada, Zip

    ]So if someone can point to a site to upload large files by making a post in this thread, then I can link into here for everyone to make their own determination. There is more then just the one label.

    For some who have a psychological emotional involvement in this, it will be hard to change their perception or reality of the situation. This post is not to inflame but to inform. Personalities should not be considered but based on the facts and evidence presented to make an inform decision. Many people want to attack the messenger and not the message. Focus on the message instead.

    I apologize if this upsets people and also I am in transit so I hope this makes sense.

    Eco

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